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The 7th Circuit Court of Appeals upheld a preliminary injunction on the state’s Medicaid administrator this week, blocking a policy change that the plaintiffs argued violates federal anti-discrimination laws by risking the institutionalization of two medically fragile children.
The federal court’s decision Monday halted a 2024 policy change by the Indiana Family and Social Services Administration, which prohibited the mothers of the named plaintiffs, two medically fragile children identified as E.R. and G.S., from being paid caregivers for their sons.
It’s a ruling that Indiana Disability Rights considers a “step in the right direction” for families in need of medically necessary care.
“We’re very pleased with the court’s decision, that the court understood that the changes that FSSA made last year could have a very significant impact on medically fragile children and their families,” said Samuel Adams, senior attorney for Indiana Disability Rights, in an interview with The Indiana Lawyer.
Attorneys for the FSSA did not respond to The Lawyer’s request for comment.
The court’s decision allows the plaintiffs’ mothers to continue receiving reimbursements for providing at-home attendant care for their sons until in-home nurses are secured.
According to court documents, at-home care is provided under the FSSA’s Medicaid waiver programs, which are intended to enable individuals who would otherwise require care in an institution to receive services at home.
For years, the plaintiffs used the FSSA’s waiver services to receive their medically necessary care at home from their mothers, who care for them full-time due to their unique medical needs, since they could not find stable nurses, the court stated.
One such waiver used by the plaintiffs and other families, Adams explained, was the FSSA’s Aged and Disabled Waiver, which introduced two care services: “attendant care” and “structured family caregiving.”
But that waiver program placed an important limit on who was eligible to serve as a paid provider of those services; it prohibited “legally responsible individuals”—spouses of recipients and parents of minor recipients—from serving as a paid provider, the court stated.
Despite this, for years, the FSSA approved and reimbursed hundreds of these individuals for providing attendant care services.
“A lot of families were relying on this attendant care to allow somebody who had been trained to provide services that would otherwise need to be provided by a nurse or other skilled provider to remain at home with their loved one,” Adams said. “If they didn’t have somebody available to provide those services in the home, these individuals would need to be in an institution.”
Aside from the attendant care service, the waiver also allowed for structured family caregiving, which was similar to attendant care except for the rate of reimbursement that caregivers earned.
According to court documents, attendant caregivers are currently paid an hourly rate of $34.36 per hour. Structured family caregivers are paid on a per diem basis with a rate between $77.54 and $133.44 per day, depending on the assessed level of need.
“FSSA estimates that individual caregivers receive, at most, 60% of the hourly rate for attendant care and between 65% and 70% of the daily rate for structured family caregiving,” the court wrote in its Monday opinion. “Actual compensation may be less than FSSA’s estimates, and many caregivers are categorized as independent contractors and therefore lack typical employment benefits.”
Adams said that families had become reliant on these permitted services for years, and the court stated that the reimbursement Jessica Carter and Heather Knight received for their attendant care had been their only form of income.
But when the FSSA discovered a shortfall in its budget of close to a billion dollars in 2023, it began implementing several cost-cutting measures, including changing its home and community-based waiver programs to begin enforcing the prohibition on legally responsible individuals providing attendant care.
However, the FSSA continued authorizing legally responsible individuals to serve as paid providers in the structured family caregiving service, thus receiving substantially lower rates of reimbursement compared to attendant care services.
Adams said it’s hard to know exact amounts per family, but an approximate weekly reimbursement under the structured family care would be about $600 a week, which he said is not enough for some families to provide for everything they need.
“Structured family caregiving was not a realistic option for some of these families, because it was not enough that they could afford to, you know, care for their families,” Adams said.
Family members would have to work outside the home to make up for the costs needed, Adams explained, and working outside the home means that there’s nobody there to provide necessary assistance.
Therefore, families may be forced to consider institutionalization, something that the American Civil Liberties Union of Indiana and Indiana Disability Rights argued violates the Americans with Disabilities Act.
Although the court affirmed the preliminary injunction on the FSSA, this ruling only affects the two plaintiffs’ families.
“It is really meant to sort of maintain the status quo during the litigation, and we’re hoping that final decision could have a broader impact, but that’s just not where we are in the case yet,” Adams said.
Adams said the FSSA, as the state’s administrator for Medicaid and Medicaid waivers, has a responsibility to provide services for families that need them most.
“They really shouldn’t be telling these families that they need to fend for themselves,” Adams said.
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